Thyroid/adrenal Experts - Would Love Your Thoughts Here

[ohsotired]

Hey gang! I haven't been too active in participating here lately (been reading, but very little posting) due to extreme fatigue and feeling VERY run down.

I have a TON of hypothyroid symptoms, as well as hypoadrenal symptoms, and I just got some labwork back.

I know that I need to treat my adrenals first, but I'm looking for input specifically on my thyroid labs so I can be well informed when I go to my follow up to discuss a plan of action with my doctor.

Latest labs:

FERRITIN 11 (10-220) - Will be starting supplementation ASAP

OSMOLALITY, SERUM 281 (270-305)

CORTISOL, RANDOM 8 (2-25) [blood draw, about 10:30am]

DHEA SULFATE 220 (35-430)

PREGNENOLONE HIGH 150 (15-32)

VITAMIN D, 25 OH 31 (30-60) - Will be starting supplemenation ASAP

FREE T4 1.31 (0.73-1.95)

TSH 1.3 (0.3-5.1)

FREE T3 3.2 (2.3-4.2)

THYROID PEROXIDASE AB <10 (<35)

THYROGLOBULIN AB <20.0 (<40)

I do have some other labs related to thyroid I can post if needed, but they are from 10 months ago.

Thanks in advance!

[georgie]

Looks pretty good to my non medico eyes. Cortisol is at its highest at 6am and the drops and continues to drop as the day goes on. As your test was at 10.30am and not 6am - this result would be considered normal. Be careful taking cortisone if you don't need it - you will put your adrenals 'to sleep' . The thyroid tests look good too.. Was B12 and Iron tested ? Have you tried other food exclusion trials ? What is your clotting disorder ? Some of those can cause fatigue and brain fog... I have FVL and may have APS myself.

[ohsotired]

Hi Georgie.

I've been advised on another forum (thyroid forum) that cortisol is in the crapper. I unfortunately am a smoker, and drink coffee all day - both of which actually raise cortisol - so I can only wonder what cortisol level is truly at.

I've also been advised that Free T3 and Free T4 are both low, but I really need to address adrenals prior to doing anything about thyroid.

I've also found some information tells me that I need to have ACTH tested, as I suffered sever head trauma as a child, and I could have a pituitary issue going on.

B12 & Iron were last tested in March. B12 was at 601 pg/ml, Total Iron was 34L. My GI recommended iron infusions, but I opted for pill form instead. I'm now considering the infusions.

To be honest, I'm not 100% certain what clotting disorder I have. I was tested for FVL and something else. The doctor never even mentioned it, but when I got lab results in hand, it said "positive for clotting disorder, but very mild. Recommend 81mg aspirin daily."

Hoping my new doctor can help me put it all together and make some sense of it, and help me feel well again.

[georgie]

To be honest, I'm not 100% certain what clotting disorder I have. I was tested for FVL and something else. The doctor never even mentioned it, but when I got lab results in hand, it said "positive for clotting disorder, but very mild. Recommend 81mg aspirin daily."

You need to get these results. There is no term 'mild FVL' or 'mild APS'. You either have it or not. FVL is genetic so you can have one gene for it ( heterozygote) or two ( homozygote) and the risks do get worse with 2 FVL genes .... but to call hetero FVL 'mild' is misleading. Same story with APS although that is an autoimmune disease. Aspirin does not work for FVL and only for APS but many Drs do not know this.

The only really accurate test for adrenals is the ACTH Stim Test as you mentioned. You must not start taking cortisone before the Test is done otherwise it will skew the test results.

Your B12 is less than good. It is normally >1000. In Japan the low of their range is 500. I need my levels kept about 1400. I also need to avoid dairy - that makes me really fatigued.

[ohsotired]

Georgie,

I have the results, but had trouble discerning from them exactly WHAT clotting disorder they were saying I had. The handwritten note on the lab results I mentioned above was written next to the results for PROTEIN C ACTIVITY and PROTEIN S ACTIVITY, but those results are within the lab's stated range.

There's a TON of tests there, but I can post them for you to see if you think you could help figure out what that all means. All I know is that no one mentioned it specifically (not even the hemotologist - he mentioned high homocysteine and MTHFR mutations, and said we just needed to retest in 6 months).

I am aware that taking cortisone during testing skews results.

I am also aware that my B12 is/was in the toilet. I was supping for a while, and need to have that retested.

[georgie]

It seems there is a Protein C problem which may need to be checked. Hemo is complicated so best to read up and the ask questions next time. It would appear you have not had the FVL test done. Or APS. High homocysteine is not a good sign. Low levels of B12 / Folate can also cause that. Sometimes the B12 is not 'active' enough to get into your cells. Sometimes you need a different type of B12.

Open Original Shared Link Open Original Shared Link Try these sites - they may help.

What I meant re cortisone before the test - was that cortisone taken for months previous to a Stim Test can skew the results. You need weeks or months off it to get an accurate picture. Possible 6 - 12 months. So if you are at a stage of thinking of using it - be aware. Have you done saliva testing for cortisol ? You can do a test with 4 samples for the day and it is an accurate test as well.

[ohsotired]

What it boils down to really, is that the hematologist that I saw regarding this clotting disorder stuff just plain sucked.

I did not have paper lab results in hand before going to see the hematologist. Mistake numero uno.

They did test FVL, and they did test APS, amongst a bunch of other things. That's why I offered to post those test results, to see if you could see something there.

B12/Folate was last tested in March. B12 was 601 (range 200-1000), Folate was 12.6 (range >5.4).

I supplemented both for a while, after the discovery of the high homocysteine, and need to have these retested.

I have not had saliva cortisol, but will be asking the doc about it this week. If she won't/can't order it for me, then I'll just order that myself before starting on any type of treatment.

[georgie]

This is from the FVL home page and shows why you need the genetic test for FVL and not just the Protein C ( APC) test.

That is why the APC resistance assay, which is a coagulation test, while fairly sensitive, is therefore NOT 100% specific for FVL, since it could be positive due to any perturbation in the activity of APC, of which FVL is the leading cause, but not the only cause. There is also the possibility that the APC Resistance assay will be indeterminate if you have a border line level.

The more foolproof test is a DNA test for the FVL gene mutation itself. It is non-ambiguous, but will only tell you if you are carrying one or two FVL genes. It will not tell you about any other mutations.

The DNA test looks specifically for the tell-tale G1691A mutation which shows that in the Factor V gene at position 1691 an "A" occurs where a "G" is supposed to be. This changes an amino acid in the Factor V protein from a residue called Arginine to one called Glutamine. This small change happens to be right at the site where APC normally cleaves Factor V, and this small change therefore is the cause of the APC resistance that the other test measures.

The DNA test is therefore by far the more precise, but is narrower in scope. Therefore, while most people use the terms "APC-Resistance" and "FVL" interchangeably, in fact they are not precisely the same thing.

All FVL will be characterized by APC resistance, but not all APC resistance will be caused by FVL.

601 is low for B12 for an adult, and if you had been taking oral supplements that would have raised the # but may not have been getting into your cells. Injections are best if you have a deficiency - especially at the start.

Open Original Shared Link

Aspirin is not the treatment for FVL. Aspirin is one of the treatments for APS which has symptoms of

Headache or migraine Giddiness

Memory loss Visual disturbance

Skin disorders Thrombosis - DVTs

Heart attack Stroke

Pulmonary embollism Multiple Sclerosis-like features

Gastrointestinal disorders Pregnancy problems

Open Original Shared Link

[ohsotired]

Georgie,

I'm sorry, I guess I'm not making myself clear - brain fog will do that!

They did run the specific test for FVL - and that was negative.

They ran tests for APS (Anticardiolipin Antibodies and Lupus Anticoagulant) - LA was negative, but the aCL's showed a very weak positive on one of them.

Protein C Activity noted as "functional"

Protein S Activity noted as "functional"

Antithrombin III Activity 109 (range76-128)

ANA 1:40 Speckled, Homogenous pattern

Homocysteine 7.9 (range 5.0-12.0)

MTHFR - C677T Mutation, Heterozygous/A1298C Mutation, Heterozygous

I think that's everything on this set of lab sheets.

[maile]

FREE T4 1.31 (0.73-1.95)

TSH 1.3 (0.3-5.1)

FREE T3 3.2 (2.3-4.2)

THYROID PEROXIDASE AB <10 (<35)

THYROGLOBULIN AB <20.0 (<40)

I do have some other labs related to thyroid I can post if needed, but they are from 10 months ago.

Thanks in advance!

Hi ohsotired,

I've also been doing some research as I wait for my labs to come back, like you have a ton of hypo symptoms, some of the adrenal etc but have had a hard time getting my GP to take me seriously.

what I've seen on another site is that the FT4 should be at about the mid point range and the FT3 should be at least half way and closer to 2/3's of the range in order to feel optimal (and to stop hair loss, weight gain etc)

I think, from what I've been reading, that your FT3 is a bit low but I will also hasten to add I am NOT an expert and maybe you might want to post your labs on one of the other sites where they seem to know this stuff inside and out.

[ohsotired]

maile - thanks for responding. You got it right! I posted on a thyroid forum and was told almost word for word what you said. But I was also told that I really needed to handle my adrenals first, and I agree.

I pretty much fired my GP after she looked at my TSH only and told me that I was fine. She gave me the "get more sleep, exercise more and eat better" speech. Hmmmm, well I eat pretty well (not perfect, but pretty darn good), I can't exercise all that much because I'm too freaking exhausted, and I already sleep 10-15 hours a stretch if left alone. Really? There's nothing wrong with me? Hmm, how about the gobs of hair that clog my shower drain every day? Or the fact that my average daily body temp has been as low as 95.8? Or the dry skin, eyes, sinuses and mouth? Does that mean anything to ya? No? Well, I must be fine then!

Sorry for the rant! I am just so tired of the "everything's normal" routine.

If your GP won't take you seriously, find one that will. You deserve to be well.

[darlindeb25]

It is very discouraging to go to the doc feeling terrible, and have them say, "Your blood work came back normal, you're fine." Mine always tells me I look wonderful and will live another 50 years. I don't feel wonderful, I have a headache every day of my life, the last 2-3 weeks the headaches have been really bad, but, I look good!

Your ferritin is way too low. I take Ferrasorb, and I am very happy with it, even the doc said it's a very good product. It is recommended by Dr. Wangen for gluten intolerant people, and I have no side effects to it, which is amazing for me. I have taken it for 2 months, and actually raised my ferritin from 22 to 45. My iron level is 60, goes up 2 points, comes down 2 points, doesn't vary much from there...I am staying with the Ferrasorb.

How about your Vit D, where is it at. Mine was down to 26, and I have raised it in 6 months to 56, which is another thing I am happy about. I will have to take it forever to just keep the level high, and that's ok.

My B12 at last check was 1016. We never had a level done before I started taking it. 3 years ago when I had been taking it for 1 year, my level was 1236, I was only taking 1000mcg then. Now I take Jarrow Vit B12 methylcobalamin sublingual 5000mcg, and am finally seeing an improvement in my neuropathy. My neuro told me to continue with the dose of 5000mcg daily. 500 is rather low, in my opinion.

I have often thought my adrenal's were in trouble. For a long time, I was taking my body temp and it ran low, like 96. When I would take a walk, then check it, it would be very low...93. They do thyroid testing and tell me I am fine. My TSH is now 1.84, they didn't give me any of the other levels.

I was diagnosed with Chronic Fatigue Symdrome in Feb. My Epstein Barr Virus is in a flare...was 4.16. The doc's advice then (was a PA), she says, "Rest and exercise, if you lose 20# you will feel so much better!" This coming from a very overweight woman. Well, I have lost 35# and still do not feel any better...except I am sleeping better...I gave up dairy and my insomnia went away! Imagine that! They fail to understand how hard it is for a CFS patient to exercise...but then, they don't live it, they talk it. I was determined to lose weight, and had been exercisng every day for a month when I had gotten this diagnosis.

Hope some of this helps.

[ohsotired]

Deb,

Thanks for your reply.

I totally get the "you look fine".......got that just yesterday with a doc that I really thought was going to be able to help me.

I am starting back on iron supplements, and thinking of exploring the iron infusions again (my GI wanted me to have those done back in March, but I resisted).

Vit D is in the toilet as well. I don't have the energy at the moment to dig out the labs, but I know it was pretty low. So I'm starting on Vit D supps as well.

B12 hasn't been checked since last year sometime, but at the time it was 612 or something like that. I supp'd for a while, so it may have come up some, but no one has bothered to check it again lately.

My body temp averages in the low to mid 96's. Yesterday's average was 96.03. I've been charting and keeping track.

I showed the chart to the doctor I saw yesterday and her comment was "Interesting. Your temp was spot on 98.6 when you came in here." Then she set down the chart and walked out. That appointment didn't go so well IMO.

If you think your adrenals are in trouble, you should pursue that. It's like pulling teeth with most doctors, but there are some really good ones out there that know how to handle that and get you feeling better. I have tons of information on it if you'd like to do some reading.

Thanks again for your response!

[darlindeb25]

If you think your adrenals are in trouble, you should pursue that. It's like pulling teeth with most doctors, but there are some really good ones out there that know how to handle that and get you feeling better. I have tons of information on it if you'd like to do some reading.

I have tried, and gotten no where. A few years back, my antibodies were high, my PCP recommended I see an endo. So, I made the appt, this man looked at me and said, "High antibodies mean nothing, it's like saying, just because you have a uterus, you are pregnant...you're fine, come back in a year." I never went back, and never will.

My TSH goes up and down, never stays at a normal range, but, everything is within the "normal ranges", so they tell me there is nothing to worry about. I wish they could live in this body for a week!

I have tons of information on it if you'd like to do some reading.

Thanks, that would be great.

[Jackpru]

Hi Ohsotired.

I cannot help you with the thyroid issue but some years ago was on Cortisone for a year and weaned myself off it by taking Pantothenic Acid and Borage oil. Both of these feed the Adrenals and I am still on them now.

[GFinDC]

Hi ohsotired,

I thought I'd give you a link to the thyroid supplement I have been taking. It really made a big difference for me. It's not super expenseive, so might be worth trying to see if it helps.

Open Original Shared Link

Natural Sources Raw Thyroid

[pele]

Hi there, I am in the midst of unraveling the mysteries of thyroid/adrenal problems and as result have barely read nay of this forum lately, but stumbled across your post.

First, go to

stopthethyroidmadness.com

and read the sections on adrenals two or three times.

Then have your doc order a 24 hour saliva test for adrenals (you do it at 8 am, 12 noon, 4 pm and midnight) to get the day's rhythm and ouptput. One blood draw is not enough. You also need to have free T3 and reverse T3 checked at the same time to find out if you can even use the T3 in your blood.

If you are still floundering in the dark go to

Open Original Shared Link

This is an exteremely active yahoo group with well over 100 messages a day, all about adrenal/thyroid stuff. And most of the folks there are gluten free.

They are recommending Carlson's chelated iron to raise ferritin, BTW. Yours is so low you may not be able to transfer T3 from blood to cells.

Best wishes!

[ohsotired]

@Jackpru - thank you for that. I will keep that in mind if I can't find a doctor that can help me.

@GFinDC - thank you for that as well! With the current shortages of natural thyroid going on, that may be the only option for a bit.

@pele - thank you for the resources - I am already well versed in STTM and a member at the yahoo group. I may end up ordering the 24 hour saliva cortisol myself, since I have struck out on doctor's thus far. I still have a few doctors to investigate though, so I'm not giving up hope yet!

[maile]

@GFinDC - thank you for that as well! With the current shortages of natural thyroid going on, that may be the only option for a bit.

Just as a note, the shortage is apparently in the US due to FDA questioning the "safety" of natural dessicated thyroid. I've read in other groups of people with a scrip successfully getting natural thyroid from the Canadian online pharmacies (unless of course you are Canadian, we can't use those )

[pele]

@pele - thank you for the resources - I am already well versed in STTM and a member at the yahoo group. I may end up ordering the 24 hour saliva cortisol myself, since I have struck out on doctor's thus far. I still have a few doctors to investigate though, so I'm not giving up hope yet!

Great, it sounds like you are up on things. Have you looked for a doc or nurse practitioner who practices functional, anit-aging or "optimal health" medicine? Those are the buzz words...

[ohsotired]

Thanks for the 'buzz words'. That will help with my search.